Untreated inflammation

clairc

Hi!

Anyone have any idea why doctors think it's ok not to treat inflammation?

I've been quite poorly for the past 3 months. In May I was in hospital with what they thought was pelvic inflammatory disease. I was on my period and had eposides of severe pain (the can't stop yourself screaming out loud kind) and they did a laparoscopy which showed I had adhesions, endoometriosis and pus in my lower abdomen. They presumed it was PID and send me home with enough antibiotics to start my own pharmacy.

I've not been well since. A few weeks after that I had a really bad reactive arthritis flare and I ended up back in hospital a few weeks ago with the same lower abdominal pain again. A scan showed a collection of fluid in the right horn of my bicornuate uterus. The doctors said the fuild was causing the pain and would get reabsorbed.

No-one really seems to know what is going on and no-one is bothered about treating me because I'm going to see a gynae and a rhuemy in a couple of weeks time. I'm left here feeling absolutely dreadful, spiking fevers, having chills, pooping pain killers like they're going out of fashion and nothing is helping.

I was chatting with a pharmacist friend of mine about it and she thinks that I never had an infection in the first place. I had the symtptoms of infection because my immune system was trying to fight off the lining of my womb that is trapped in my right horn - hence the pain, fever, inflammation and pus. I've been on several courses of antibiotics and they seem to help a little bit but as soon as I stop the symptoms get worse again. I saw a local gynae last week who said I didn't have an infection and that it was the inflammation that is causing my symptoms but he made no attempt to treat the inflammation and only offered me injections to stop my periods (which I refused because I can't deal with any more side effects at the moment).

I'm going back to the GP sugery this afternoon to ask for help again. I have been there so much recently I'm thinking of applying for my own parking space I wondered if steroids would help bring the inflammation down and help me a bit until I get to see the specialists? NSAIs don't agree with me but I need to do something. They can't just leave me ill for another 2 weeks can they???

Disgruntled of Worksop
(Clair)

dorcas

Oh Clair, you have been through the mill and back again.

what awful pain and illness to cope with. :shock:

I don't have words of wisdom about this Clair..... but maybe if you go armed with the information you've gained about the endrometriosis being at the heart of the pain to your GP this afternoon and ask him about steroids he'll have to give you an opinion.... and hopefully treatment. :roll:

I am so sorry Clair... this is jut terrible for you.

Sending love and positive thoughts for this afternoon flower.

Iris xxxx

dreamdaisy

You are, as Churchill put it, 'stalling between two fools'. You need to get to a gynaecologist much sooner than your appointment. Surely that is one condition that can be sorted and perhaps it's at the root of the reactive flare. If I were you I would contact your hospital and tell them you will take any cancelled gynae appointment should one arise. Sometimes one has to chase and chase hard, despite lacking the energy. This is your health at risk, pester them. DD

clairc

I telephoned the hospital last week but no joy. Because my appointment was made through Choose And Book they can't change it. Choose and Book have no earlier appointments and are now booking into November. The only way I can get seen sooner is if my GP has me admitted as an emergency which isn't going to happy because the pain is mild at the moment, it's just the inflammation that making me feel poorly.

Clair

julie47

sorry clair that you are having such a bad time at the moment, I wish i knew what to say.
all i can say is good luck with doc this afternoon and i hope you start to feel better very soon.
thinking of you
love juliepf x

clairc

Just got back from the doctors with Ibuprofen and Lansporazole.

She asked what I was being treated with at the moment and I said nothing. I asked about steroids but the doctor didn't want to prescribe them because it wasn't for a specific rheumatologic complaint and that my inflammation markers weren't that high. I reminded her I had reactive arthritis. I also expressed how I think the inflammation is autoimmune but she said it probably wasn't because my ANA was negative.

Basically she just said the ibuprofen would work and to wait and see what the specialists said.

Clair

dreamdaisy

What is ANA? DD

dorcas

Sorry you didn't get very far with your doc appointment this afternoon. :roll:

ANA (anti nuclear antibody test DD to test for autoimmune disorders) It isn't the only test for inflammation..... did you have CRP or ESR done too?

This must be so frustrating for you Clair... I wish I had something constructive to suggest other than phone your consultant's secretary and ask for your appointment to brought forward.

Gentle (((hugs)))

Iris x

clairc

Thank you for the hugs!

It certainly is frustrating. There doesn't seem to be any way of bringing the appointments forward other than getting admitted to hospital and I'm not poorly enough for that.

My ESR and CRP are usually higher than they should be, when I was in hospital a few weeks ago they were raised but they didn't give me any numbers. When my reactive arthritis started to flare back in June my ESR was 72 and my CRP was 35.

My problem is no-one wants to do anything because I'm waiting to see specialists and I'm not a very patient patient! Everyone seems to be clutching at straws as to what's going off but I think it's all connected.

The kids go back to school tomorrow so at least I'll get some peace and quiet to rest up and hopefully the drugs will do their job. Fingers crossed!

Clair

dreamdaisy

Thank you dorcas. I've never heard of that one! I hope you get some proper rest tonight clair. Sleep well. DD

frogmorton

Hi Clair

Just checking in to see if the ibuprofen did anything at all to help?

and to see how you are?

Love

Toni xx

Hey DD Iris...can we open up M*A*S*H??

we can do any operations at all ourselves for Clair??

speedalong

Hi Clair,

Your situation sounds terrible, you poor thing. If the pain gets any worse - go back to the docs and burst into tears and convince him to get you admitted as an emergency ( would you be able to get someone on standby for the kids?) Hope the iboprufen works ...

If you get really desperate - you could also go to A&E or out of hours docs service. We have an out of hours service at our local hospital and S was once emergency admitted from there - at last a doc who took him seriously.

Hopefully the threat of MASH reopening will be enough to scare aware any inflammation!!

Speedy

Rainbow77

Hi Clair

I am really sorry to hear about all your recent problems. I hope the pain killers are helping you and it is also really important to rest up and see if that helps a little bit. Glad your children have gone back to school so that gives you more rest.

I am sorry that your GP could not do more for you. When are your specialist appointments? Are they soon? I know, not soon enough. But hang in there - you are nearly there.

There is obviously something going on in your body and you know that you are not right. Make sure you continue to keep up your diary of pain, symptoms and problems as when you have your appts, they are your best chance of getting the right treatment. It has all got to be linked together - you need to explain this when you go. I hope the specialists are brave enough to listen and also refer you on if they can't help instead of keep fobbing you off.

You will get to the bottom of this, I can totally sympathise with how you are feeling as it took me 7 months to get the right referral and another 7 months to start DMARD therapy and I am know really reaping the benefits of that. They are worked so well that I am slowly reducing the combination of drugs trying to find a suitable maintenance dose.

Lots of hugs for you (((((((((((((((((((())))))))))))))))))

Fayann xx

clairc

Thanks for all your messages. Unfortunately the ibuprofen isn't doing anything, the pain is getting worse and I was awake for a few hours in the night with a fever. I'm topping up with codeine and paracetamol but I'm still uncomfortable and my arthritis is flaring up again.

To make matters worse I had a freak knitting accident yesterday and I managed to perforate my right eardrum with a knitting needle! Let's just say next time I get the urge to try on a scarf that is still on the needles I will RESIST!

I'm at my wits end, I really don't know what to do. The doctors haven't got a clue what is causing what and they won't do anything until I see the consultants. I am seeing a gynae on 21st September and a rheumy on 22nd September. There is no way of bringing the appointments forward, I've already tried.

I don't know if the gynae problem is triggering the arthritis or vice versa. If I get admitted to hospital it will be to my local hospital who are a) useless and b) won't do anything until I've seen the specialists so I'm stucking waiting.

Clair

dreamdaisy

Go to A&E. NOW. This cannot carry on for another 12 days. DD

clairc

dreamdaisy wrote:

Go to A&E. NOW. This cannot carry on for another 12 days. DD

I appreciate your advice but I'm afraid that won't work. I tried that a few weeks ago and they just sent me home saying there was nothing wrong.

I was quite poorly and weak with a fever and a Gp visited me at home and told me to go there if I didn't get any better so I went the next day and was treated pretty poorly.

The doctor was quite annoyed that I'd gone to A&E, he said I didn't have a fever, I didn't have an infection and that there was nothing wrong with me. He said I would have to go through my GP if I wanted a referral to gynae as they couldn't do it from A&E unless it was an emergency. He was quite cross at me and completely ignored that I'd spiked a fever whilst I was waiting. My temp was normal when I got there but when the nurse did my obs again it was 37.8, which is quite high for me. I told him this, he glanced at my chart and said I didn't have a fever and told me to go home.

Our A&E isn't very nice and unless it's an absolute emergency I won't go there.

Clair

daylily

dreamdaisy wrote:

Go to A&E. NOW. This cannot carry on for another 12 days. DD

Totally agree with DD
It's got to be sorted NOW.
Noone should be in pain that long
(((((())))))) and thinking of you

dreamdaisy

What a miserable lot of people - I bet they would think very differently if it was them struggling with this. You cannot carry on like this for much longer clarec, this is a bad thing. I bet it was a bunch of blokes who saw you. I am annoyed on your behalf - and astonished at the lack of care and consideration. Can you really hang on for another 12 days? DD

clairc

I've had to call the doctor out today, things are getting worse not better.

Good news I'm only a week away from my consultant appointments, bad news is the ibuprofen is doing absolutely nothing and my arthritis is flaring again. I've been on it for 10 days and the pain and stiffness is getting worse!

The doctor who came was the one who refused to send me to a rheumy and told me to take a herbal prebiotic. Thankfully he was a little more understanding this time. He said he didn't know what to do so I told him the stepwise approach on the NHS Choices website said NSAIDs, steroids and DMARDs. He said he couldn't prescribe DMARDs as I would have to talk to the rheumy about that but he did agree to put me on a 1 week course of steroids. Woo hoo!

Fingers crossed they will reduce the inflammation because the way I am at the moment I won't be fit to travel to my appointments.

Clair

dreamdaisy

I hope the steroids work and I hope you can hang on. I am worried about you. DD

clairc

I'm hanging in there! Please don't worry! I'm made of tough stuff, even if I do have the odd wobble sometimes.

My life is full of ups and downs at the moment. My pre-payment certificate arrived in the post this morning so I didn't have to fork out for my prescription but the bad news is I can't start on the steroids just yet.

I was googling to see what I can and can't take with them and saw the advice that you should tell your dentist if you're having any work done. I'm booked in for 2 fillings tomorrow so I phoned up the dental surgery and they said I would have to wait until I'd finished the steroids before they would do the work. I should have had the fillings done in May but had to cancel because I was in hospital so I've decided to delay starting the steroids so I can go to the dentist.

C'est la vie!

Clair